arthur and carly fleischmann

Last week I mentioned something I liked about the book Carly’s Voice, written by Arthur Fleischmann with his autistic daughter Carly Fleischmann. This week, before leaving the topic entirely, I feel I should provide a more complete book review.

My wife and I have read several – what should I call them? – autism memoirs, and Carly’s Voice is by far my wife’s favorite. I think that’s partly because both father and daughter are excellent, waste-no-words writers, and partly because, unlike a lot of the bloggers we consume, Arthur is clear-eyed and entirely unsentimental about autism’s challenges. Even as Carly learns to communicate, she spends a few days/nights a week at a residential care center because her behavior threatens to break up her family. Arthur confesses what many (including many autism bloggers) wouldn’t dare put on pixels: that his wife at least occasionally contemplated something like murder-suicide, but held back because of their two neuro-typical kids; he quotes her saying with a heavy sigh, “I couldn’t leave them motherless.”

Eventually, Carly learns to speak through various electronica; she convinces Ellen DeGeneres to read her bat mitzvoh speech on video, appears on Larry King Live and other news programs, and earns a Youth Champion Award from Hollyrod, the autism-fighting organization of Rodney Peete and Holly Robinson Peete. By the end of the book (around 2010), 15-year-old Carly Fleischmann has amassed tens of thousands of followers on Facebook and Twitter; she’s a passionate advocate for autistic people and a patient explainer of what autistic kids are experiencing. Through all this, Arthur is candid about how lucky he is compared to other families burdened by autism, and also forthcoming about the many challenges they still face. As an author it’s a fine line to walk – they’ve got a miracle and a mess – but Arthur walks it quite well. It’s an excellent read and I recommend it for anyone who wants a deep immersion in the world of caring for and enabling the disabled.

Of course I was fascinated to read about their work with Applied Behavior Analysis, with various specialists (the Fleischmanns seem to have a LOT more money and helpful relatives than my wife and me), with ongoing negotiations with schools and facilities. All useful, all helpful. I am often grateful that Dar wasn’t born with autism around the time that Temple Grandin was a girl, when very little was known. Families like the Fleischmanns have blazed a trail for us, if only we can get Dar to venture along it.

I sometimes rolled my eyes that Arthur seemed to write as though Carly was his only child; so often, he speaks of wishing he could act like other parents. And yet, didn’t he have that with 2 of his 3 kids? Eventually I came to realize Arthur meant something harsher, which is that autism takes away the “normalness” of a family even if a majority of its kids are neuro-typical. That’s not exactly great news for us, considering we were hoping that our second child would somewhat mitigate the pain of the first. Arthur doesn’t write of mitigation, only complication. The book is a splash of cold water: chilling and invigorating at the same time.

This was probably my favorite passage in the book, at about the 23% mark:

We met other families in the autism community. Many seemed to embrace their child’s disorder as if their uniqueness was as benign as left-handedness or freckles. ‘I think they’re in denial,’ Tammy [wife of author] once said. I sensed their admiration of their child’s unusual behavior to be genuine, and I was jealous. I saw no beauty in this condition. Autism was a thief. The opportunities it stole from Carly were obvious: the chance to participate, to play, to learn, to fit in. It stole a sister from Matthew and Taryn. It stole energy and money and patience. It was stealing our daughter, bit by bit. I saw no beauty, only evil. What force of good attempts to rob a parent of the love of a child? I was greedy; while I had two children with whom I could speak, play, and be a father, I wanted all three.

Thank you, Arthur. A thief, yes. Stealer of opportunities, yes. Many times on this blog, I’ve mentioned the raging debate within the autism community over whether to treat autism as a disability or as a condition akin to webbed toes or something. The only autistic member of the board of Autism Speaks resigned because of that organization’s insistence on treating it as a disability, and the community is still in email-comment war over this issue. I do believe that eventually, autism may have to be bifurcated into two separate conditions (yes, this has been tried with the set of conditions known as Asperger’s, but clearly not successfully enough). As far as I’m concerned, the “love-them-as-they-are” camp can have “autism” if they want it; I volunteer “sautism” or whatever for those of us in the “something-has-to-change” camp.

At least 15% of Carly’s Voice consists of reprinting tweets/e-messages to and from Carly. (And if you want more Carly, you know where the internet is.) Like everyone else, I am amazed and impressed at Carly’s wit and wisdom and sheer wherewithal to type all these thorough replies, considering her well-documented difficulties with typing. Arthur claims to reprint the messages that readers would find “compelling,” and though I’m slightly disappointed we don’t read Carly positioning herself on the disability/condition divide, I also utterly understand: why should Dad alienate half the book’s potential audience?

Sometimes I forget that as much help as Dar needs, I need a little help as well. As much of an inspiration as Carly is for many, I think her father may be an even bigger inspiration for me. He proves that a dad can get through something like this without utterly losing his sanity (or sense of humor, as he shows repeatedly), and even alchemize the lead of disheartening autism into the gold of heartening writing. The odds are still against Dar becoming Carly. But I could do a lot worse than emulating Arthur.